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2016 Clinical Conference Speaker Bios

Deborah Adams, MA, BSN, RN

Ms. Adams is the Clinic Nurse Manager of Neurology, Neurosurgery/Spine, and Pain Management at

Medical University of South Carolina. She has been the Neuroscience Service Line Clinic Manager since

2010, with an extensive nursing background in Oncology nursing and Family Medicine/Primary Care. She

was involved in the identification of challenges and initiation of a business plan for the Therapeutic

services to form the interdisciplinary collaboration with Neurology.

Don and Berkley Akers

Don Akers is a Boeing Technical Fellow in the field of Embedded Software, and has worked at Boeing

since 1987. Don grew up in Kentucky, but has lived in St Louis since 1984. Berkley Akers has been a full

time mom/wife and has held a Real Estate license for several years. In addition to serving in numerous

capacities with local schools and churches, she enjoys writing and sharing her life experiences and the

challenges she has overcome. Berkley grew up in Texas, but has lived in St Louis since 2000. Don and

Berkley got married in October of 2010 and both have been involved in leading different Bible Studies at

their church, and are avid St Louis Cardinals baseball fans. Don was diagnosed with ALS in spring of 2015

and continues to work at Boeing. Berkley has invested a lot of time into her own research and is Don’s

caregiver. Neither would have chosen this path, but both are accepting their lot and trying to make the

best of it.

Kristy Allen, DPT Kristy has been a physical therapy team member at Lahey Hospital and Medical Center’s multidisciplinary ALSA Certified Center for the past 9 years. In addition to her work with patients with ALS, she also runs the hospital’s wheelchair clinic providing both power and manual wheelchairs for patients with a multitude of diagnosis. Over the past 9 years she has assisted over 200 patients receive wheelchairs. Kristy recently presented on this topic at the Massachusetts ALSA’s Symposium titled: ALS – Hope, Discovery, Treatment: A Clinical Symposium for Health Care Professionals. Peggy Allred, PT, DPT Dr. Allred is currently the Research Program Administrator/ Neuromuscular Program Manager at Cedars-

Sinai Medical Center in Los Angeles, CA. She transitioned to LA in July 2013 with Robert Baloh MD, PhD.

to oversee the Motor Neuron Disease Research Center’s clinical research program. In the past 3 years,

she has implemented 15 research protocols for the ALS program including natural history studies, blood

and tissue repositories, outcome measure development protocols, and both drug and device clinical

trials and will serve as Director of Clinical Operations for the upcoming stem cell trial at Cedars-Sinai to

begin in 2016.

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Erin Arra, RD

Erin completed a BS in Dietetics from the University of Dayton and a MS in Nutrition from Case Western

Reserve University. She completed a dietetic internship at the Cleveland VA Medical Center. She is a

Registered Dietitian at the Cleveland VA Medical Center and the RD on the ALS interdisciplinary team at

the Cleveland VA ALS Center. Erin has done several presentations on Nutrition and ALS at the VA

national level. Erin is currently engaged in a systematic review of the nutritional impact on quality of life

and survival in ALS patients.

Lori Banker-Horner, LPN, BA

Lori is the Care Services Director for The ALS Association Wisconsin Chapter. She has been a Licensed

Practical Nurse for over 30 years serving in many areas of health care. She received her BA in

Psychology and Adult Education from Alverno College, Milwaukee. Ms. Banker-Horner has served on

Task Forces for the ALS Association, has presented at the ALS/MND International Symposium and has

served as facilitator in the Medical Ethics and Palliative Medicine Course for the Medical College of

Wisconsin. She received the “Health Care Hero” award from the Small Business Times for her work with

the ALS Community.

Sue Berg, BS, CCLS Sue has a bachelor’s degree in child life focusing on Education, Psychology and Growth and

Development. She is certified in child life, has presented at our National Child Life Conference regarding

grief support groups for children. She has worked as a child life specialist for more than 30 years in both

the inpatient pediatric setting and in the adult setting. Presently, she is working in a large adult level 1

trauma center, supporting adults as they go through their cancer treatment, preparing children to visit

loved ones in the adult hospital. As a child life specialist, Sue continually works with the palliative care

team to support families at the time of end of life helping children cope with grief.

Lakshmi Joshi Boyle, MS, CCC-SLP

Lakshmi has worked as a Speech-Language Pathologist for 30 years, 29 of those at the University of

Vermont Medical Center in Burlington, Vermont. She has been part of a team of dedicated

professionals who work at the nationally accredited ALS Center in Burlington, under the direction of Dr.

Tandan for over 10 years and has had the honor of learning most from the patients she has served. Her

primary areas of focus are in Swallowing and Cognitive-Linguistic Disorders in the Neurological

population, with more recent efforts in high-tech AAC.

Kellie Branch-Dircks, MSW, LCSW

Ms. Branch-Dircks has been a social worker for the past 25+ years. Prior to accepting the role of Care

Service Coordinator with the Greater Chicago Chapter in January 2016, she was the Advanced Care

Planning and Palliative Care Coordinator for a local hospital system. She is First Steps certified from

Gunderson-Lutheran and has extensive experience in quality of life issues. In addition to her role with

ALS, she has an active private practice that offers equine assisted counseling, traditional talk counseling,

and is licensed in 38+ states, which allows her to provide tele-health counseling services to patients in

rural areas or who are unable to attend counseling in a traditional setting.

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Alisa Brownlee, ATP, CAPS

Alisa Brownlee is a RESNA Certified Assistive Technology Professional and is also a Certified Aging in

Place Specialist in Home Modifications. She is a 20 year staff member the ALS Association working for

both the Greater Philadelphia Chapter and the National Office. Alisa speaks, blogs, writes articles and

uses social media to increase awareness of ALS and the use of assistive technology. Her specialty areas

are communication, computer access, and electronic aids for daily living. She is a strong advocate for

patient rights with elected officials, insurance companies, and other healthcare providers.

Lisa M. Bruening, MS, CCC-SLP

Lisa is employed at The ALS Association Northern Ohio Chapter as Director of Care Services. She is

responsible for assisting more than 50 persons each year with education and communication needs

related to speech impairments caused by ALS. The Northern Ohio Chapter serves over 360 persons each

year through Chapter programs and services. Ms. Bruening also serves as an Adjunct Instructor at the

University of Akron School of Speech-Language Pathology and Audiology and an Adjunct Clinical

Instructor at Case Western Reserve University Department of Psychological Sciences Communication

Sciences Program. She received her Masters’ in Communicative Sciences and Disorders at the University

of Wisconsin–Madison. She has been involved in AAC assessment and treatment for over 20 years. Lisa

has a family connection to ALS through her maternal grandfather.

Cathy Carver, MS, ATP

Cathy graduated with BS in PT from the University of Mississippi (1996) and a MS in PT from the

University of Tennessee (2000). She has worked in inpatient and outpatient adult neuro rehab centers.

She was credentialed as an Assistive Technology Professional (ATP) through RESNA in 2004 and as a

Seating and Mobility Specialist (SMS) in 2011. In 2010 she began to work solely in the wheelchair and

seating clinic primarily with adults with all levels of disability from congenital to acquired mobility

limitations, including people with ALS. She has taught courses/lectures/labs in wheelchairs and seating

since 2007.

Amy Chen, MD, PhD Dr. Chen holds a board certification American Board of Psychiatry and Neurology, with subspecialty certification in Neuromuscular Medicine; AANEM certified in electrodiagnostic medicine. Dr. Chen has a longstanding interest in ALS and is actively involved in the evaluation and management of veterans with ALS in the multidisciplinary clinic.

Heather Clark, PhD

Dr. Heather Clark is a Chair of Speech Pathology in the Department of Neurology and Associate

Professor in the College of Medicine at the Mayo Clinic in Rochester, Minnesota. She provides speech-

language services in the multidisciplinary ALS clinic. Her research includes characterization of speech,

language, cognitive, and swallowing impairments accompanying neurologic disease and the efficacy of

rehabilitative methods addressing these impairments.

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John Costello, MA, CCC-SLP

John Costello is director of the Augmentative Communication Program and the ALS Augmentative

Communication Program at Boston Children’s Hospital where he has been a speech-language

pathologist for 31 years. John has worked on developing an innovative model of message banking for

children in the ICU and now has modified that model to support people with ALS. He has lectured

nationally and internationally on topics in augmentative communication and ALS and has authored or

co-authored several papers and chapters related to augmentative communication.

Trinity Deibert, MS, CCC-SLP

Trinity is a home health speech pathologist. She was recently awarded the Oregon Association for Home

Care 2016 Therapist of the Year award for her work with PALS. Trinity specializes in AAC, serving a large

number of the PALS living throughout the Portland metro and surrounding areas. She is an incredibly

active provider of SGDs, is highly proficient at personalizing and programming communication software,

and is a master at customizing access methods. She is a tremendous resource and advocate for many of

the people and families living with ALS.

Brenda Edelman, LCSW, BCD

Brenda has a Master’s degree in Social Work and has been working with patients and families

addressing chronic illness, disability and bereavement for over thirty years. She has been affiliated with

the Greater Philadelphia Chapter since 1999. She is currently the Director of Patient Services where she

supervises staff of 17 allied healthcare professionals, attends various ALS clinics including the newly

formed ALS VA (Veteran's Administration) Clinic in Philadelphia, continues to have a social work case

load of patients, facilitates support groups, attends Board meetings, and manages the patient services

budget.

Denise H. Epps, MS, CCC-SLP

Denise Epps has over 20 years of experience as a speech language pathologist. Her primary focus is

dysphagia management in adults with neurologic disorders. Ms. Epps received her B.S. degree from the

University of Southern Mississippi in Hattiesburg, MS and her M.S. degree from the University of

Mississippi in Oxford, MS. She currently works at the University of Maryland Medical Center Midtown

Campus as the lead therapist for the rehabilitation department. Ms. Epps has been a clinical instructor

for the University of Maryland Medical System since 2008 and CCCE since 2012. Ms. Epps has worked

with patients with ALS since 2008 and is the Site Manager for the University of Maryland ALS Clinic.

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Jeremy Fagundes, PT

Jeremy is a Physical Therapist at the Central California Neuroscience Institute at UCSF, Fresno, providing

physical therapy services to patients with Motor Neuron Disease. Jeremy works with patients, patient

caregivers and multidisciplinary team to form a plan of care that is best fit for each individual patient.

He works with multiple durable medical equipment vendors to assist each patient with necessary

equipment to improve their quality of life and to maximize their functional independence. He has

worked closely with the ALS population since 2010 serving the greater Central San Joaquin Valley

population. Jeremy received his Master of Physical Therapy degree in 2012 from California State

University, Fresno. Since licensure as a Physical Therapist, Jeremy works in a level 1 trauma center and

has worked in most hospital departments and outpatient clinics. He also assists with patient care in the

multidisciplinary clinic setting at the Central California Neuroscience Institute at UCSF, Fresno for

Muscular Dystrophy and ALS clinics.

Sara Feldman, PT, DPT, ATP

Sara is the Physical Therapist and the Assistive Technology Professional at the MDA/ALS Center of Hope

at Drexel University College of Medicine. She began her work with individuals with ALS/MND in 1994.

Sara is the Clinical Evaluator representative on the NEALS Executive Committee and co-chair of the

NEALS Physical Therapy Committee with Peggy Allred, PT, DPT. She is the Clinical Liaison for the ALS

Hope Foundation and moderates the listserve, physicaltherapy@alshopefoundation.org. In 2013 she

was elected to the Board of Directors of the International Alliance of ALS/MND Associations and is Co-

Chair of the Allied Professionals Forum.

Laurie B. Fieldman, LCSW

Laurie is the Director of Social Services for the Les Turner ALS Foundation in Skokie, IL and has been with the Foundation for seventeen years. She provides in-home counseling to patients and family members, as well as facilitates monthly support groups. Ms. Fieldman received her Master’s degree in social work at the University of Chicago School of Social Service Administration, and she also holds a Masters of Management degree from National Louis University. Valerie Fluellen, MSW, LISW-S, C-SWHC Valerie has over 10 years of experience in the social work field. Mrs. Fluellen completed her undergraduate training at Baldwin Wallace College and her Master’s Degree in Social Work at Cleveland State University. She is credentialed as a Licensed Independent Social Worker with a Supervisory Designation (LISW-S) from the State of Ohio Counselor, Social Worker and Marriage and Family Therapist Board and holds a Social Work Certification in Health Care (C-SWHC) from the National Association of Social Workers (NASW). In 2012, she joined the Louis Stokes Cleveland VA Medical Center as a Clinical Social Worker in the Home Based Primary Care program, in 2013 she was promoted to the Social Work Program Coordinator for the Spinal Cord Injury/Disorders (SCI/D) Service where she continues to remain dedicated and serves our nation’s heroes. Mrs. Fluellen is also a part-time graduate professor at Cleveland State University, a case manager for Cleveland Clinic, a field instructor and training supervisor.

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Marinella Galea, MD Dr. Galea is a graduate of the University of Milan Medical School, Italy. She completed a post-doctoral program at New York Hospital Cornell Medical Center and trained in Internal Medicine at Mount Sinai School of Medicine in New York. She is Board Certified in Internal Medicine and Spinal Cord Medicine. Dr. Galea has been practicing since 2001 at the JJ Peters VAMC Spinal Cord Injury Center in the Bronx, where she is currently the Director of Spinal Cord Injury Inpatient Services. In 2014 she was appointed the directorship of the newly created ALS Clinic and since then she has lead the efforts to create a state-of-the-art ALS Center under the auspices of VISN 2. Pamela Glazener, OTR Pamela Glazener is a senior Occupational Therapist at Houston Methodist Hospital. Mrs. Glazener graduated from Texas Woman’s University in 1991 with her Masters in Occupational Therapy. She has worked at Houston Methodist Hospital for 24 years and with the ALS clinic for 20 years. She received the TOTA Clinical Excellence Award in 2012 and recently published her research, “The Effectiveness of a New Neck brace Design for the Amyotrophic Lateral Sclerosis Population.” Mrs. Glazener also presented at the International Seating Symposium in 2015 on power mobility needs in the ALS population. Lee Guion, MA, RRT, FAARC Lee is a member of the multidisciplinary team at the Forbes Norris ALS Research and Treatment Center in San Francisco. She is the author of the textbook Respiratory Management of ALS. She is affiliated with the Skyline College Bachelor of Science in Respiratory Care Program and lectures frequently on the topics of respiratory assessment and treatment in ALS, developing best practice in ALS care, and end-of-life decision making. Gail Houseman, RN, CNS-BC

Gail is a registered nurse employed by the ALS Association Greater Philadelphia Chapter. Gail has been

the coordinator of the Chapter’s Visiting Volunteer program for the past fifteen years.

Ileana Howard, MD

Dr. Howard is the Medical Co-Director of the Interdisciplinary ALS team at the VA Puget Sound, where

she oversees care for one of the most active Veteran ALS programs in the country. After obtaining

degrees at Smith College and Harvard Medical School, followed by PM&R residency at the University of

Washington, she now serves as Outpatient Medical Director for Rehabilitation Care and Clinical Assistant

Professor of Rehabilitation Medicine at the University of Washington. Some of her many clinical

interests include optimizing quality of life and function for persons with ALS, quality improvement,

spasticity management, and healthcare provider education.

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Richard Hurtig, PhD

Dr. Hurtig is Professor Emeritus in the department of Communication Sciences & Disorders at The

University of Iowa and is a Fellow of the American Speech & Hearing Association. He directs the UI

Assistive Devices Laboratory and is also President and Chief Scientific Officer of Voxello. His research

over a period of 25 years has included the development of assistive technologies for individuals with

complex communication needs and the development of strategies to facilitate patient-provider

communication in acute care and for pALS.

Richard Isaacs, MBA

Rick Isaacs was diagnosed with ALS in November of 2013. He and his wife Cindy live in Huntsville

Alabama and have 2 adult children; Jackie and Greg, Rick worked for Sikorsky Aircraft for 33 years as an

engineer and program manager. In January 2015 Rick went on long term disability due to ALS. In May

2014 Rick accepted a position on the board of trustees for the Alabama chapter of the ALS Association.

Additionally, he serves on the advisory board for the national ALS Association President and CEO to

provide patient perspective on current issues. In November 2015 Rick became an ALS Research

Ambassador for the North East ALS Consortium (NEALS) to help people with ALS understand and

navigate the clinical trials process.

Kathleen Kaminski, MA, CCC-SLP, ATP

Kathleen Kaminski is a Speech-Language Pathologist at the Atlanta VA Medical Center. She previously

worked at the Emory ALS Center in Atlanta. Kathleen received her Bachelor of Arts in Communication

with a concentration in Communication Disorders from North Carolina State University. She completed

her Master of Arts in Speech-Language Pathology from The University of Georgia. Kathleen holds the

Certificate of Clinical Competence from American Speech-Language-Hearing Association. She is a

certified Assistive Technology Professional and subject matter expert in the fields of augmentative

communication and neurogenic communication disorders in degenerative diseases; specializing in the

MND population for more than 10 years.

Melinda Kavanugh, PhD, LCSW

Dr. Melinda Kavanaugh earned her PhD in social welfare at the University of Wisconsin-Madison in 2013.

Dr. Kavanaugh's research addresses the impact of chronic illness on families, with a primary research

focus on children and teens acting as caregivers for family members with chronic illness – youth

caregivers/young carers. In addition to her work with youth caregivers, she studies the role of social

work in health care and the collaborative relationship between social work, nursing and medicine. Dr.

Kavanaugh is particularly interested in how caregiving influences the physical and psychological well-

being of these youth caregivers, and how best to develop support programs and services for this

population. Her research is influenced by her experiences as a medical social worker including her time

spent as clinical social worker for the Huntington’s Disease Center of Excellence at Washington

University School of Medicine in St. Louis, Missouri. She is currently collaborating with the national

Amyotrophic lateral sclerosis (ALS) Association and the ALS Association of Wisconsin on a study of young

carers across the U.S. who provide care to a family member with ALS.

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Tami L. Kendra-Romito

Ms. Kendra-Romito is the ALS Program Coordinator in the Department of Neurology at Cedars-Sinai

Medical Center located in Los Angeles, California. Ms. Kendra-Romito has been with Cedars-Sinai for 15

years; 3 years in her current role. Ms. Kendra-Romito is the point-person for the ALS Program.

Pamela Peden Kittrell, MSN RN CCRC

Pam has worked exclusively with drug and device research in neuromuscular disease with Dr. Carlayne

Jackson since November of 2002. Pam has presented locally, regionally, nationally and internationally on

ALS research and care of the ALS patient. She has also contributed to neuromuscular research

publications and abstracts. Since 2009, she has worked as the coordinator of the weekly UTHSCSA ALSA

multidisciplinary clinic which serves approximately 200 patients across Texas. Pam is a graduate of South

Dakota State University and the University of Texas Health Science Center School of Nursing. She is a

certified research coordinator and is a member of the Association of Clinical Research Professionals.

Pam previously served on the Executive Board of the Muscle Study Group as the Study Coordinator

Representative (2007-2009). She is a member of a number of national professional organizations for

nursing, research and ALS research including: the Muscle Study Group, NEALS, the NEALS Research

Nurse Committee, the NEALS Vent Committee, the ALS Research Group, ALSUntangled, and has been a

member of the UTHSCSA Investigational Review Board since 2010.

Tara Klucker, MA, CRC Tara received her Master of Rehabilitation Counseling degree from Maryville University, St. Louis,

Missouri in 2005. She began working with ALS patients in 2008 as a case manager with The ALS

Association, St. Louis Regional Chapter and as the chapter’s clinic liaison. In 2014, she began directing

the chapter’s public policy, community partnership, and programs and evaluations. She has supported

the chapter in developing new standards of care that allows the right people to access the right service

at the right time during the journey of ALS.

Frances Kozlowski, BS, MS

Frances completed a BS in Dietetics from Kent State University and a MS in Nutrition at Case Western

Reserve University. She completed a dietetic internship at Cleveland VA Medical Center and is a Clinical

Dietitian/Certified Nutrition Support Clinician at the Cleveland VA Medical Center. She is the head of the

Nutrition Support Team and nutritionally assesses inpatients with ALS. She has obtained publication in

The Consultant Pharmacist with an article titled, Selected Dietary Modifications May Affect Disease

Management. She is currently engaged in a systematic review of the nutritional impact on quality of life

and survival in ALS patients.

Jerome Kurent, MD, MS, MPH

Mr. Kurent holds board certifications by American Board of Psychiatry and Neurology, with subspecialty

certification in Neuromuscular Medicine, and certification by the American Board of Hospice and

Palliative Medicine. Major interests include ALS, hospice and palliative medicine, and clinical ethics. Dr.

Kurent was a founding member of the RHJ VAMC ALS Multidisciplinary clinic as well as founding member

of the Medical University of South Carolina ALS Multidisciplinary clinic. He is actively involved in the

evaluation and management of veterans with ALS.

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Jana LaMarca, OTD, OTR/L, ATP

Dr. LaMarca serves as a staff Occupational Therapist in the VA Long Beach Health Care System. She

specializes in treatment of Veterans with spinal cord injuries and disorders including Amyotrophic

Lateral Sclerosis (ALS). She has earned her Doctorate of Occupational Therapy from the University of

Southern California and her Assistive Technology Provider certification through the University of

Pittsburgh. Dr. LaMarca is one of two Occupational Therapists who work weekly in the ALS

Multidisciplinary Clinic at the facility. She is also a co-founder of the facility’s monthly ALS Support

Group.

Erica Law, MA, OTR/L

Erica serves as a staff Occupational Therapist in the VA Long Beach Health Care System. She recently

graduated from the University of Southern California with a Master’s of Arts in Occupational Therapy.

Her passion lies in providing services to Veterans with spinal cord injury and/or disorders, such as

Amyotrophic Lateral Sclerosis. She co-founded the facility's monthly ALS Support Group and is actively

involved with research on current mobility devices in relation to meeting individual occupational needs.

Maria Lim, OTR/L, ATP

Maria is the Lead Occupational Therapist for the Spinal Cord Injury and Disorders (SCI/D) Health Care

Group at the VA Long Beach Health Care System. She has enjoyed worked with Veterans with SCI/D for

her entire 30+ year career. She has earned her Assistive Technology Provider certification. Ms. Lim is an

Occupational Therapist in the ALS multi-disciplinary clinic and a co-founder of the monthly ALS support

group in Long Beach. Her interests are in clinical practice, assistive technology, clinical research and

mentorship.

Michelle Longo, MSW, ASW

Michelle is a Regional Care Manager for the ALS Association Golden West Chapter. Her passion for

serving others is rooted in the belief that everyone deserves compassion and dignity. It is with these

values, thorough assessment skills and the necessary tools (i.e. AAC Tool Kit) that Michelle directly

engages with people living with ALS at medical clinics and in their homes to provide supportive care

management services.

Jane Luethke, RN

Jane is a Registered Nurse. She holds a B.S. in Nursing from the University of Central Oklahoma and has

worked as a staff nurse, home health nurse with an infusion pharmacy. Jane has worked as a care

services coordinator the Tennessee ALS Association since 2006 and considers her job her ministry.

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Cris Mammarelli

Cris Mammarelli has been a Care Services Coordinator for the ALS Association, Arkansas Chapter since

November 2014. Prior to working for the chapter she served as a board member and a volunteer from

the Little Rock area since 2006. In the past she served as a board member for ALSA chapters in Nashville

(2004) and in Tampa (2001). She has a broad career background working for other non-profit

organizations in Communications and Outreach including the American Red Cross, Arkansas Children’s

Hospital, MDA and St. Jude Children’s Research Hospital. She has a personal connection to ALS as her

mother fought the disease from 1982 to 1990.

Irvin Marquez, RRT, RCP

Irvin is the primary Neuro-Respiratory Therapist at the Central California Neuroscience Institute at UCSF,

Fresno, providing respiratory therapy support to patients with Motor Neuron Disease. Irvin is proactive

in finding the best therapies for patients diagnosed with Chronic Obstructive Pulmonary Disease (COPD),

various types of Sleep Disordered Breathing such as Obstructive Sleep Apnea, and especially those

patient’s diagnosed with Motor Neuron Disease. Irvin’s efforts to find the “best practice” led him to

successfully contact and is currently working with The various Neuro-Respiratory Therapist from UCSF,

and Forbes Norris Clinics in Neurology/Research to develop the first Northern California Neuro-

Respiratory Chapter (Currently in process). Mr. Marquez has been a Registered Respiratory Therapist

since 1996, and has had formal training in Sleep Disordered Breathing as a Sleep technician, is versed in

Pulmonary Function Studies, as he is one of the founders of Central Valley Pulmonary Diagnostics. Irvin

also was in the DME business as a clinical specialist and regional manager for a notable length of time,

which makes him in touch with new technologies of multiple CPAP, APAP, and Bi-Level therapies. Irvin

began working with his first ALS patient in 1998, and continues till today. His compassion for these

patients has been unremarkable visiting and following up with patients on his own free time.

Donna Behler McArthur, PhD, APRN, FNP-BC, FAANP, FNAP

Dr. McArthur has over 48 years’ experience within nursing, including 38 years as a Family Nurse

Practitioner, NP educator, and administrator within ambulatory health care. She currently is a clinical

professor at the University of Arizona College of Nursing with a joint appointment in the Department of

Neurology Dr. McArthur’s scholarship, practice, and community activities are focused on initiatives

surrounding the education of nurses in advanced nursing practice and ALS. In 2006 she was awarded the

American Academy of Nurse Practitioners Foundation/Endo Pharmaceuticals Grant for her research

study, Pain Perception in Adults with ALS.

Douglas G. McClure, MDiv, PsyD

Dr. McClure is a licensed psychologist in independent practice in Lake Oswego, Oregon. Dr. McClure has

the privilege of working with those living with ALS and their family members and was a member of the

caregiving team for a good friend who lived with ALS for six years. For several years, he facilitated an ALS

support group and has led staff trainings on self-care and the emotional impact of the work we do. Dr.

McClure serves on the Board of Directors for the Oregon and SW Washington chapter. Personal self-care

practices include playing golf, yoga, hiking with friends and family, and riding a tandem bicycle with his

wife Claudia.

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Kendra McInturf, MS, CF-SLP

Kendra serves as the Assistive Technology Services Coordinator at the ALS Association Oregon and SW

Washington Chapter. In that role, she staffs clinics at two Portland area ALS Centers and offers

communication support for people and families living with ALS. Support includes provision of AAC/AT

equipment and home visits to discuss communication changes and ALS, voicebanking, quick access

communication tools, speech-generating devices, computer and phone access, and more. Prior to

joining the ALS Association, Kendra conducted a research study investigating spouses’ experiences living

and communicating with loved ones who were totally locked-in.

Heather Meehan, BSRC, RRT-NPS

Heather is currently managing more than 130 patients, has set up >290 home NIV patients and currently

responsible for 13 ALS hospice patients and continues to provide regular education to hospice nurses

and companies on the importance of NIV use and its application in the ALS patient. She is most

compassionate for the ALS population, works closely with the regional ALS Chapters in the areas her

program serves and has worked to develop ALS specific respiratory management protocols to provide

this group of patients with the best possible care and outcomes from initiation of therapy to end of life.

Paul P. Mehta, MD

Dr. Mehta is a medical epidemiologist at the Agency for Toxic Substances and Disease Registry (ATSDR),

sister agency for the Centers for Disease Control and Prevention (CDC). He is the Principal Investigator

for the United States congressionally-mandated National Amyotrophic Lateral Sclerosis (ALS) Registry

and is responsible for providing medical, scientific, and epidemiological expertise on matters related to

ALS. Prior to joining ATSDR, Dr. Mehta was with the Extramural Research Program Office and was

responsible for overseeing external research initiatives for the National Center for Environmental Health

(NCEH) and ATSDR. Dr. Mehta started his career at CDC as a Team Leader for the Division of Select

Agents and Toxins (DSAT) where he was responsible for CDC’s Etiological Agent Import Permit Program

(EAIPP) as well as conducting audits of high containment laboratories nationally. Dr. Mehta is trained in

Internal Medicine and has a Doctor of Medicine (MD) from Fatima College of Medicine and a Bachelor’s

of Arts (BA) in Biology from the University of Toledo.

John Morris, RN, BS, CSLI

John is the associate director of BAYADA Home Health Care’s Adult Simulation lab in Charlotte, NC. He

holds a degree in Kinesiology from Wheaton College and is finishing his BSN at Western Carolina

University this fall. He’s worked 5 years as a medic for the U.S. Coast Guard, 8 years as a nurse at Level 1

Trauma / Neuro / Medical ICUs, taught over 20,000 learners BLS / ACLS / PALS for the American Heart

Association, and has 8 years of home health experience as a field nurse, preceptor, clinical manager,

clinical educator, and director. He was awarded BAYADA’s National RN Hero of the Year in 2013 and

North Carolina Government Advocate of the Year in 2015. He is passionate about home health,

simulation, and guiding the next generation of learners toward excellence.

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Kate Morris, PhD

Dr. Morris holds a PhD in counseling psychology from The University of Iowa and completed a post-

doctoral fellowship in Behavioral Medicine at St. Louis University medical school. She works at Salem

Hospital and has a private practice in Portland, Oregon. She has taught mindfulness classes within the

community health education center at the hospital.

Bridget Moran, MPH

Ms. Moran is the Support Service Manager for The Association for Frontotemporal Degeneration (AFTD).

AFTD is the national organization involved in providing education and support to people with

frontotemporal degeneration and their loved ones; their main office is located in Radnor, PA.

Jennifer Murphy, PhD

Dr. Jennifer Murphy is a licensed clinical neuropsychologist who has focused her research career on

frontotemporal dementia in Amyotrophic Lateral Sclerosis (ALS), at the ALS Center at the University of

California San Francisco (UCSF). She received her doctorate from the University of Texas at Austin, and

her postdoctoral training at the University of California San Francisco (UCSF) Memory Clinic. She has

given dozens of invited talks both internationally and nationally, and has published dozens of research

articles and chapters. Her most recent publication in March 2016 describes how cognitive/behavioral

screening tools can assist in the treatment of neurological disorders.

Marcia Obermann, RN, BSN, HRM

Marcia has been a RN for 37 years. She was a specialized Certified Infection Control Practitioner and

holds a Certification in Healthcare Risk Management. Marcia has served as Director of Quality, Resource

and Risk Management in hospital administrative departments. Her son, Eric, was diagnosed with ALS in

4/2002 and died in 8/2010. She was the primary care giver for Eric. She and her husband were founders

and board members for the ALS Association – Alabama Chapter. She volunteered for 7 years as acting

Care Service Director and 3 years in championing the creation of a multidisciplinary ALS Care Clinic in

Huntsville, Alabama where she served 7 years as Clinic Nurse Director. Marcia is currently serving on the

National ALS Association Care Services Committee.

Robert Osborne, RN

Robert Osborne has been a nurse for over 20 years. His extensive dual experience includes 14 years of

hospice work and almost 10 years in ALS. He has presented nationally and internationally on the subject

of palliative and hospice care in ALS. Additionally he has authored chapters on end of life care in ALS for

the Hospice and Palliative Nurses Association, and the ALS Association. He is a Master's trained nurse in

long term care case management at San Francisco State University.

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Daniel Potapshyn, MA

Daniel is a Regional Care Manager for the ALS Association Golden West Chapter where for the past five

years he has been providing assistance to ALS patients and families in a variety of areas including

psycho-social support, information referral regarding care, and advocacy for health and insurance

questions. Daniel has an extensive (over 20 years) background in hospice and bereavement work. He

was the lead Bereavement Coordinator for a major Northern California hospice before beginning his

work in the field of ALS.

Abigail Potts, MS, CCC-SLP

Abigail Potts is a Speech Language Pathologist on the ALS Care team at the Seattle VA. She completed

her Bachelors in Communication Sciences and Disorders at Western Washington University before

earning her Masters of Science in Speech Language Pathology at the University of Washington. During

her 10 years as clinical staff with the Seattle VA, she has worked with inpatient rehab, acute care, and

outpatient interdisciplinary teams and provides clinical supervision for trainees. She has a strong belief

in the power of patient centered, interdisciplinary care; with a focused interest in improving quality of

life for Veterans with ALS.

Melissa A. Ramirez, PT, DPT, NCS

Dr. Ramirez has been a physical therapist in the James J. Peters Veterans Affairs Medical Center Spinal

Injury Care Center and Amyotrophic Lateral Sclerosis Clinic since 2014. Melissa received her Doctor of

Physical Therapy (DPT) degree from Columbia University's in 2008, and began her career in neurological

rehabilitation at Mount Sinai Medical Center working in both the acute care and inpatient rehabilitation

settings. Melissa became a certified neurological clinical specialist (NCS) in 2011 and started teaching

the Columbia University DPT program as a laboratory instructor for spinal cord injury rehabilitation.

Maureen Reid, RN, BSN

Maureen is the staff nurse ALS Association Greater Philadelphia Chapter. She provides care to ALS

patients in the Hershey ALS clinic and participated in the study.

Mallory Riggs, MS

Mallory is a Speech-Language Pathologist at Froedtert Hospital in Milwaukee, Wisconsin. She has been a

member of the ALS Clinic team at Froedtert Hospital since September 2015. Mallory earned her

Bachelor’s and Master’s degrees in Communication Sciences and Disorders from the University of

Wisconsin-Whitewater. She most recently worked with Mayo Clinic in Arizona, specializing in the

evaluation and treatment of adult neurological swallowing and communication disorders. She has

clinical competencies in videofluoroscopy and fiberoptic endoscopic evaluation of swallowing (FEES).

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Mary C. Riggs, MS, CRC, LPC Mary received her Masters of Rehabilitation Counseling degree from Southern Illinois University-

Carbondale, Illinois in 1994. She began working with ALS patients in 1999 as The ALS Association, St.

Louis Regional chapter’s first full time case manager. During her employment, with the chapter, she has

designed programming and services for the chapter, worked in the clinic setting as the chapter liaison.

She currently focuses on training new staff, working on internal processes to maximize efficiency and

effectiveness allowing the chapter to be the best steward of donated funds. She has presented at

numerous conferences through the years on topics relevant to ALS.

Charles Robinson, DSc, PE

Dr. Charles Robinson is the Director of the Center for Rehabilitation Engineering, Science and

Technology at Clarkson University in Potsdam, NY, and an Adjacent Professor of Physical Medicine and

Rehabilitation at SUNY-Upstate Medical University in Syracuse. Robinson was the first VA Senior

Rehabilitation Research Career Scientist in the USA, and retired from the VA after 30+ years in service to

veterans with disability. He was founding Chair of the Rehabilitation Science and Technology

Department at the University of Pittsburgh. Dr. Robinson specializes in neural rehabilitation engineering

and assistive technology, is a registered Professional Engineer, and serves as Board Member of the

Upstate NY ALSA Chapter and on the national ALS Care Services Committee. His wife of 39 years passed

away from complications of bulbar ALS.

Amy Roman, MS, CCC-SLP

Ms. Roman is a licensed Speech Language Pathologist who specializes in augmentative/alternative

communication (AAC) for people with ALS. The AAC Program she developed at the Forbes Norris ALS

Research Center was awarded Program of the Year by the California Speech and Hearing Association.

Amy is the director of the ALSA Golden West’s AAC program which provides evaluations, loans and

training to patients and speech pathologists. Amy contributes to publications and presents on AAC and

ALS topics and has developed many communication tools and measures. Her website AmyandpALS.com

offers practical solutions for the daily challenges of living with ALS.

Laura Royal, MS CCC-SLP

Laura received her B.S. in Business Administration from Auburn University in 1992 and her Masters in

Speech Pathology from the University of Alabama in 1996. She has been working at the University of

Alabama at Birmingham (UAB) Hospital since 1999, and has been serving patients with ALS since 2004.

She is involved in UAB's collaborative monthly ALS clinic where she works to provide swallowing and

communication assistance to promote safety and increased quality of life issues in the outpatient

setting.

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Katelyn Sandy PT, DPT

Katelyn Sandy is a physical therapist at the Forbes Norris MDA/ALS Research and Treatment Center in

San Francisco. Katelyn is a Doctor of Physical Therapy and completed her degree at the University of

Evansville. She has worked in both acute and skilled nursing settings before coming to the Forbes Norris

Center. Katelyn is an APTA credentialed clinical instructor and an electronic health record quality

champion. She is a member of the American Physical Therapy Association and is part of the Neurology

Section Degenerative Diseases Special Interest Group and the Academy of Geriatric Physical Therapy.

Micaela Gwen Sarazen, RRT, BSRT Micaela Sarazen has worked as a respiratory therapist since 2008. All of those years have been at

University California Davis Medical Center. She has specialized in Adult, Pediatric and Neonatal intensive

care and served as the RT liaison for the Children’s Hospital’s Critical Care Transport Team. In January

2015 she started working in the ALSA and MDA Clinical Center for Excellence at UC Davis PM&R. In that

time she has established herself as an innovative leader in the respiratory management of

neuromuscular patients working closely with the esteemed Dr. Craig McDonald and Dr. Nanette Joyce.

Amy Scharmer, MSSW, CAPSW

Amy Scharmer is a Clinic Social Worker with the UW Health Neurology Clinic in Madison, WI. She has a

Master’s degree in Social Work. Amy staffs and helps to coordinate the ALS Multi-Disciplinary Clinic with

UW Health in addition to her other duties with the clinic and has been doing this for the last ten years.

Prior to this, she worked with the elderly and those with developmental disabilities in the community.

Brooke Slayman, CCC-SLP

Brooke received her B.A. in Communication Sciences and Disorders and Religious Studies and her M.A.

in Speech Language Pathology at the University of Iowa. At Iowa, she was involved in several research

projects focusing on use of high and low tech strategies to support end-of-life conversations. Her clinical

training was completed within the Veteran Affairs Health Care System, including an externship at the

Iowa City VA, followed by a Clinical Fellowship at the Malcom Randall VA Medical Center in Gainesville

FL. She is currently working for the John Peter Smith Healthcare Network in Fort Worth, TX.

Richard A. Smith, MD

Dr. Richard Smith is the director for the Center for Neurologic Study in San Diego, California. His early

research focused on the palliative care leading to articles in the New England Journal, Journal of

American Medical Association, British Medical Journal, etc. His subsequent work has focused on the

development of treatments for ALS in kindred neurologic disorders. Nuedexta, which he developed in

collaboration with Avanir Pharmaceuticals, is approved for treatment of pseudobulbar affect which

commonly in ALS. He and his colleagues pioneered the use of antisense therapeutics which are currently

being evaluated for the treatment of ALS and Huntington’s disease.

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Erin Springer, MSN, RN

Erin is the nurse coordinator for the ALS and neuromuscular clinics in Iowa and has worked with the

clinic for 4 years. During that time, the ALS and neuromuscular population has increased exponentially

and she has been challenged with the creation of additional clinics and process improvement to provide

the best, most efficient care for patients, families and her team. She has had a diverse career including

graduation from The University of Iowa’s College of Nursing with both her BSN and MSN, surgical

intensive care, lecturer and clinical instructor for 5 years at the College of Nursing, cardiomyopathy

nurse coordinating and now neuromuscular diseases. She works with an amazing team to care for

patients and their families and believes she has found her calling as a nurse coordinator. She enjoys

patient education and empowerment, process improvement and connecting with patients and families.

She lives in Iowa with her husband and 3 sons.

Julie A.G. Stierwalt, PhD, CCC-SLP

Dr. Stierwalt is Senior Associate Consultant of Speech Pathology in the Department of Neurology at the

Mayo Clinic in Rochester, Minnesota. She provides speech-language services in the multidisciplinary ALS

clinic. She has numerous journal publications, chapters and has recently published a co-authored

textbook titled Brain-Based Communication Disorders. She is a Fellow of the American Speech-

Language-Hearing Association.

Gina Strack, OTR, ATP

Gina received her Master’s of Occupational Therapy from Texas Woman’s University in 1991. Gina has

worked as the Occupational Therapist for the The ALS Association Certified ALS center at Baylor College

of Medicine in Houston Texas since 2007. Gina received her ATP certification in 2001, and has practiced

as both and evaluator and provider for custom rehab equipment, specializing in alternative drive

controls and access. Mrs. Strack also presented at the International Seating Symposium in 2015 on

power mobility needs in the ALS population. Gina currently practices as an OTR and ATP in Houston.

Krista Strait-Higgins, MSW, LISW, ACSW

Krista has worked for The ALS Association Iowa Chapter since 2011. She received her Bachelor of Arts

degree in Social Work from the University of Iowa in 1994, and her Master’s Degree in Social from the

University of Michigan, Ann Arbor in 1998. She has been providing collaborative medical social work

care for patients and families with acute medical conditions since 1995.

Anne Supplee, MDiv

Anne is a Care Services Coordinator at the MN/ND/SD Chapter. She received her Master of Divinity from

United Theological Seminary and has worked as a chaplain since 2007. She joined The ALS Association in

2008.

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Shannon Todd, MSW, CSW

Shannon has worked for The ALS Association Mid-America Chapter since 2006. She received her

Bachelor of Arts degree in psychology from Doane College in 2000, and her Master’s degrees in Social

Work and Public Administration from the University of Nebraska Omaha in 2005. She has been providing

social work services and case management for patients and families dealing with acute and chronic

health conditions since 2000.

Tom Tower, MS

Tom holds an undergraduate degree in psychology from the University of California at Santa Cruz and a

Master's degree in counseling from Western Oregon State College. He works as a hospice chaplain and

counselor in private practice specializing in cognitive behavioral and attention training (mindfulness)

approaches.

Antoinette Verdone, ATP, MSBME

Ms. Verdone is a Rehabilitation Engineer with sixteen years of experience providing assistive technology

to people of various disabilities. Antoinette is the owner of ImproveAbility, LLC, a private assistive

technology consulting company based in Austin, TX. Before moving to Texas, Antoinette worked for the

Greater New York Chapter of the ALS Association for five years where she was responsible for the

Chapter’s equipment loan programs as well as providing assistive technology advice and service via

home visits. Antoinette is part of the multidisciplinary team at the Emory Bellard ALS Clinic in Round

Rock, TX providing assistive technology advice to ALS patients.

Susan Walsh, MSN, ACNS-BC

Ms. Walsh is a certified nurse specialist who received graduate training at Case Western Reserve

University. Her focus is on nursing management and support of patients and families in life threatening

illness. Susan coordinates patient care services for the Hershey ALS Clinic and for the Greater

Philadelphia Chapter of the ALS Association.

Monique Washington, RN, MS, APHN-BC Monique Washington is the Management of Information & Outcomes Coordinator for the Spinal Cord

Injury and Disorders (SCI/D) Service at the Cleveland VAMC. She obtained her Bachelor of Science in

Nursing in and Master’s Degree in Community Health Nursing from The Ohio State University and holds

ANCC board certification in as an Advanced Public Health Nurse.

Laura Winterstein, CVA

Laura is the volunteer manager at The ALS Association, MN/ND/SD Chapter. She engages volunteers in

programs, for special events, and as administrative support in the office to meet the needs of the

chapter. Additionally, she coordinates the family assistance program in which volunteers are matched

with people affected by ALS to help with everyday tasks. Laura has ten years of experience coordinating

volunteers, all of it in the healthcare field. She received her BA in Psychology from Lawrence University

in 2003, earned her certificate in volunteer leadership (MAVA) in 2007, and became a certified volunteer

administrator (CCVA) in 2016.